A study published last week in the journal Cell has led to speculation that a powerful new gene editing technique is about to be developed.
Gene editing has received widespread media coverage over the past few months. Most of the excitement has centred on a specific gene editing technique, the CRISPR-cas9 system. Research conducted with CRISPR-cas9 on human embryos has been highly controversial, at least partly because some people fear it will lead to gene editing being used to alter the human germline for clinical applications, and will have unpredictable effects on future generations.
Brenda Kelly and Charles Foster
Female Genital Mutilation (‘FGM’) is a term covering various procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons (WHO, 2012). It can be associated with immediate and long-term physical and psychological health problems. FGM is prevalent in Africa, Middle East and South East Asia as well as within diaspora communities from these countries
The Government, keenly aware of the political capital in FGM, has come down hard. The Serious Crime Act 2015 makes it mandatory to report to the police cases of FGM in girls under the age of 18. While we have some issues with that requirement, it is at least concordant with the general law of child protection.
What is of more concern is the requirement, introduced by the cowardly device of a Ministerial Direction and after the most cursory consultation (in which the GMC and the RCOG hardly covered themselves in glory), by which healthcare professionals, from October 2015, are legally obliged to submit patient-identifiable information to the Department of Health (‘DOH’) on every female patient with FGM who presents for whatever reason, through the Enhanced Dataset Collection (EDC). The majority of these women will have undergone FGM in their country of origin prior to coming to the UK. Continue reading
Just out today is a podcast interview for Smart Drug Smarts between host Jesse Lawler and interviewee Brian D. Earp on “The Medicalization of Love” (title taken from a recent paper with Anders Sandberg and Julian Savulescu, available from the Cambridge Quarterly of Healthcare Ethics, here).
Below is the abstract and link to the interview:
What is love? A loaded question with the potential to lead us down multiple rabbit holes (and, if you grew up in the 90s, evoke memories of the Haddaway song). In episode #95, Jesse welcomes Brian D. Earp on board for a thought-provoking conversation about the possibilities and ethics of making biochemical tweaks to this most celebrated of human emotions. With a topic like “manipulating love,” the discussion moves between the realms of neuroscience, psychology and transhumanist philosophy.
Earp, B. D., Sandberg, A., & Savulescu, J. (2015). The medicalization of love. Cambridge Quarterly of Healthcare Ethics, Vol. 24, No. 3, 323–336.
A couple of weeks ago, in an airport bar, I met the foundation of modern bioethics.
I was crawling back to London: he was heading to JFK.
‘I usually fly First’, was his opening, as we sat on those vertiginous stools. ‘So I’m usually in the Lounge. But it’s good to be reminded how the other half live.’ I was glad, for about a minute, to be part of his democratic education.
He’d had quite a start on me, and was several G & Ts down when I arrived. That might have loosened his tongue. Or perhaps, and probably, he was as keen when sober to talk obsessively, self-referentially and self-reverentially about himself. Continue reading
Written by Benjamin Pojer and Daniel D’Hotman
Faculty of Medicine, Nursing and Health Science, Monash University
Oxford Uehiro Centre for Practical Ethics, University of Oxford
A recent review published in the European Journal of Neuropsychopharmacology (1) on the efficacy and safety of modafinil in a population of healthy people has found that the drug “appears to consistently engender enhancement of attention, executive functions, and learning” without “preponderances for side effects or mood changes”. Modafinil, a medication prescribed in the treatment of narcolepsy and other sleep disorders, has gained popularity in recent years as a means of increasing alertness and focus. Informal surveys suggest that up to one in five undergraduate university students in the UK admit to using the drug as a study aid (2). Previously, the unknown safety profile of modafinil has been an obstacle to its more widespread use as a cognitive enhancer. Admittedly, the long-term consequences of modafinil use remain unclear, however, given its growing popularity, this gap in the literature should not preclude a discussion of the ethics of the drug’s use for cognitive enhancement. Continue reading
Guest Post: ‘I don’t want to die, but I am too scared to be anything different’: The role of identity in mental illness
If you break a leg or have a cold, it probably wouldn’t affect your identity at all. But when you have an invasive, chronic illness, it will probably change your way of being in the world, and the way you perceive yourself. Our body is the vehicle with which we interact with the world. There are many personal accounts in the disability bioethics literature on how a chronic illness affects one’s sense of being. For example, in the work of Kay Toombs, who was diagnosed with multiple sclerosis, or Havi Carel, who was diagnosed with lymphangioleiomyomatosis (LAM), a rare lung disease. Both describe how their illnesses gradually changed their identities, their senses of being.
For his role in the new movie Southpaw, Jake Gyllenhaal gained 45 lbs (20 kgs) of muscle in six months. Many praised Gyllenhall for his dedication in undergoing this remarkable physical transformation. Few have questioned whether this achievement was aided by the use of performance enhancing drugs (PEDs). Some in the bodybuilding community claim that such massive weight gain would be nearly impossible without the use of steroids. For experienced bodybuilders, it is considered an accomplishment to gain 7-10 pounds of muscle in a year “naturally”. Training in combination with taking human growth hormone (HGH) can add 4.6 pounds of lean muscle mass, in three weeks.
Steven Pinker has recently written an op-ed questioning the contribution of bioethics to the safe and efficient regulation of research. This has been widely misinterpreted and criticised, though Alice Dreger has written a recent accurate blog in support of Pinker. Pinker provocatively said that bioethics should get out of the way of research. This has been interpreted to mean that we should give up ethics review of research. Nobody, not me, and not Steven Pinker, thinks we should abandon ethical review of research. He actually says, ” Of course, individuals must be protected from identifiable harm, but we already have ample safeguards for the safety and informed consent of patients and research subjects.” Pinker is objecting to the unnecessary, unproductive obstruction that much bioethics represents to good research and regulation.
I largely agree with him and have said as much myself over the years. I recently wrote a piece for the anniversary issue of the JME arguing as much. I applaud him for trying to generate some self-reflection in the field.
By Daniel K. Sokol
Daniel Sokol, PhD, is a bioethicist and lawyer at 12 King’s Bench Walk, London. He has sat on several ethics committees, including the UK’s Ministry of Defence’s Research Ethics Committee.
In a recent Opinion piece in the Boston Globe, Professor Steven Pinker made the surprising suggestion that the primary moral goal of today’s bioethics should be to “get out of the way”. “A truly ethical bioethics”, he argued, “should not bog down research in red tape, moratoria or threats of prosecution”.
This bold assertion no doubt echoes the thoughts of many scientists whose research requires the approval of an ethics review committee before springing to life. As a PhD student many years ago, I experienced first hand the frustrations of the tedious review process. I spent hours drafting the protocol, revisions and responding to the Committee’s questions, time I would have preferred to spend conducting research. While a popular sentiment, getting out of the way is not the goal of bioethics.
The goal of bioethics is to allow potentially beneficial research while ensuring that the risk of harm to participants and others is proportionate, reduced to the lowest practicable level, and within morally acceptable limits. The risk of harm can never be eliminated, but it can usually be reduced with minimal effort or cost. It may be as simple as testing a new piece of equipment one more time in a laboratory before attaching it to a human for testing.